What is Ehlers-Danlos Syndrome
Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary fro...
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My Daughter has EDS She needs Tubes in here ears.
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My daughter has had 6 ear infections in the last 5 months They want her to see a ENT to get tubes ASAP am very scared to do it cause i worry about Bleeding in the Surgery.. Has anyway had to get them or have advice what I should do... PLEASE HELP...
Posted on 01/07/09, 11:01 pm |
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Professor Rodney Grahame is the leading specialist in the UK. He works at Univerity College Hospital in London. He diagnosed my EDS type 3.
Hypermobility Clinic UCL Hospitals 40-50 Tottenham Street London W1T 4WT UCLH Secretary Leah – Leah.antunovic@uclh.nhs.uk 0207 380 9281 
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I have 3 now young Adults with EDS type 3, two of these as children had tubes inserted in there ears with no issues at all. The surgeon was advised that there was a bleeding issue and he did what he had to. 1 child had the tubes inserted 3 times with no long term damage or scarring. Hope this helps.
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This is quick, easy and huge relief for her. Do it.
In regard her airway, ask them NOT to hyperextend her neck and use flexible intubabation if tube is necessary.
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I am 14 and I have EDS...I had tubes in my ears when i was little and everything was fine...hope everything goes well...
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My son a;so had 3 sets of tubes in his ears and he did well - it was necessary so the benefits outweigh the dangers. Just make sure the Anastesiologist is aware and they are careful with that! Good luck!
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